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Ronda 
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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 Posted: Nov 05 2008 at 9:46am |
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Hi Billie and Everyone, I've been really rolling this around in my head, because when we ask for a protocol we need to get it right.
I've been thinking to simplify this maybe we should pose that Young pre-menopausal triple negative women should be informed the mastectomy gives a beter chance of survival. We have a study on that. Then if gals want to further explore the BRCA gene for proph oophs they can. If this is standard education for this type of bc, it could cause the patients to become more informed.
I really want to toss this back and forth with all of you, because I think we're on to something great, please speak up and add your 2 cents to the opinion. We really want to get this right.
Knowing what you know now, what do you wish you were told and in what order? How would that have changed your treatment choice and or outcome.
Ronda
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 05 2008 at 10:00am |
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Ronda,
When I was collecting suggestions/recommendations for the "Questions for the surgeon, med and rad oncs", the one thing that really stood out, and was CalGal's first concern, was that if there was a family history of cancer, then the BRCA testing should be done before anything else. Of course, some have no family history, and/or their family members are not cooperative.
The younger the woman, it seems that there is the possibility that they are BRCA 1-2 +? Is that correct? Or is it just TNBC?
I still have not added that question at the very beginning of the document, but have been encouraging new gals to ask for the test. In Lori's case, misdiagnosis was the culprit, and I have seen quite a few gals posting the same scenario.
Being postive for the BRCA genetic mutation changes everything. If you are not aware of this, then there is a possibility that you will have to go back for the mastectomy/ooporectomy......if that is what you feel you need to increase your survival/chances for recurrence/mets.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Nov 05 2008 at 12:59pm |
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Hey Nancy,
There are several reasons why gene testing before surgery descisions aren't a good idea. I believe it is this confusion that is leading to the lack of optimal treatment.
1. Gene testing is typically not paid for by insurance so many women simply won't get it.... AND
2. It takes several weeks to get results which could result in treatment delays BUT THE BIGGEST REASON IS...
3. Because we know that there are other undiscovered TNBC genes out there, we just don't know what they are, but the data suggests that TNBC in pre-menopausle women benefit from mastectomies as well as BRCA's so that most likely could mean that pre-menopausale TNBC's are genetic which would also include many BRCA's in that catagory.
By going this route young pre-menopausal women would have a mastectomy strongly recommended. If it were me I'd probably recommend it for all TNBC's to be safe, but the doc's don't have any studies to support it and may think it's too extreme.
I think BRCA testing is wise for all, but many don't have the option so you could look to the pre-menopausal TNBC instead....much easier. Then if down the road they want to check BRCA status great. It won't catch everyone, but it will catch a hellavalot more genetic BC than we're getting now. I think the big question is to ask the BRCA's on this site if they were pre-menopusal at the time of their dx, if most say yes, they would have also been covered by this theory.
I am BRCA 1 and was pre-menopausal at the time of dx.
How is my thinking on this???
Ronda
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 05 2008 at 1:51pm |
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I was post menopausal when learned of my BRCA 1 mutation.
My insurance did pick up 90% though.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 05 2008 at 2:04pm |
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Ronda,
So, I set up a poll asking just the BRCA + women if they were pre-menopausal or post-menopausal at the time of dx? What about all the very young gals ....34-42 and under, who are on the site who can't possibly be pre-menopausal?
Problem is that hardly anyone goes to these polls, which I feel could be very important for the medical professionals on this site...if they actually look at them.
Lori had her BRCA results in 2 weeks. She waited one month between the first botched surgery and the mastectomy. Caryn had said that is she had known her BRCA status that her decisions would have been much different.
I will set up a poll. How I wish that we could invite every woman who has been dx TN to join this site and actually participate in the polls, and that the medical profession were actually using these numbers for a study.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Nov 05 2008 at 3:41pm |
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Hi Pam, but were you pre-menopausal at the time of your first dx?? If so, you would have been protected by a mast. recommendation, get my drift??? You wouldn't have gone on to get your 2nd cancer.
Nancy, I guess the point is, the study shows that non BRCA pre-menopausl women benefit too, so if they get a negative BRCA test and are pre-menopausal then they would still benefit from a mast. If we can show that BRCA gals mostly get first dx before menopause then we can say all pre-menopausal TNBC benefit from the mast. period... and then move them to BRCA testing if they show a history, for more proph. recommendations. The point is all pre-menapausal women would be covered with a mast. even the BRCA's.
Whatdoyathink?
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 05 2008 at 4:39pm |
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Ronda,
whatdoIthink?
 I think I have to copy and paste your posts for me to read and decide how to set up the poll.
 Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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AustinCarol
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Joined: Jun 12 2008 Location: United States Status: Offline Points: 45 |
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Posted: Nov 05 2008 at 5:23pm |
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I do not think we have enough info to strongly recommend mastectomy for pre-menopausal women. We simply are not a statistically relevant sample here. I do think TN women should be advised to consider masts more, but not strong recommendation to do it.
I do think the medical profession should specifically study survival rates of lumpectomy/mastectomy for TN at different stages. I think they could collect the medical histories of women here to be included with info from else wheres also. BRCA+ are already often recommended to have mast and ooph. My BRCA test results took over a month to be returned. There was no way I wanted to wait that long with my tumor growing as fast as it was. A wait could have resulted in mets which I have not had. I feel lucky and well-informed to have gotten my medical team. On a slightly humorous side, I've said that the only breast cancer patients of any stage from 0 to 4 who should definitely have mast are the <1% of breast cancer patients who are male!  Our best man from our wedding had breast cancer over 5 years ago. He got a mast after <2 cm lump!-Carol |
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Dx 01/06 DCIS LB (age 47) TN Stage 2a; High grade; MBRS 9/9; 4 cm; nodes neg; BRCA-
Tx neoadjuvant AC4 + T4 dose dense; Lump 06/06; 35 rads (7 boosts) 08/06 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 05 2008 at 5:40pm |
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Carol,
Lori was expecting to have to wait for 4 weeks for her test results. They were back in 2 weeks....2 long agonizing...thats's all she could think of....weeks. Lori's tumor grew very fast also.
I think that is the problem...the Tn women are not being advised to consider a mastectomy. They are told that if the tumor is small, then they should consider a lumectomy. From some of the articles that Pam has posted, they are saying that the smaller tumors are more aggressive than the larger ones.
Lets just hope that they soon do studies of all the TN's, at all stages. Then perhaps women would be better able to make informed decisions.
Have you read any of CarynRose's posts? Just search and she has made some arguable points. She is BRCA1+, but didn't know until after...hindsight is always 20/20.
Loved your recommendations for the males
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Nov 05 2008 at 5:43pm |
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Hi Carol, Did you read this study?? If not, could you, I'd like to get your take on it??
Ronda
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Nov 05 2008 at 5:54pm |
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Hi Nancy,
In order to produce a statistically significant poll, one that would meet scientific standards and capture doctors' attention, the design, execution, sample size and selection would need to be strictly controlled. It would be difficult to get that on this site. Not to say that these polls aren't valuable in many ways. dr |
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Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 05 2008 at 8:05pm |
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Donna,
Not only all that you have written...but very few go to the polls and fill them out....and then there is no follow-up by anyone of any importance....like the scientists....medical profession.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Nov 06 2008 at 3:48am |
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I went a couple times and it told me I was ineligible to fill them out? Maybe I wasn't logged in?
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Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 06 2008 at 6:52am |
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Donna,
You know that Pam had said that she couldn't vote in one of the polls either. If you are posting, then you are logged in. Maybe a glitch somewhere?
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Nov 06 2008 at 6:53am |
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Hi Gals,
When I went to my onc the last time I always ask "What is new and exciting in the wonderful world of triple negative breast cancer?" I mentioned to him about the Lumpectomy vs. Mastectomy and I believe he said they were now recommending mast. for TNBC's. I THINK? and I think it was because of this study. I'm going to verify that.
What I'm trying to get at is what can the foundation do to provide a clear path for treatment and support for all informed choices made. I'd like to see every lumpectomy being shown correct stats while decidng treatment. This study suggests a 30% benefit (not that lumpectomies are the same as mastectomies for TNBC's), hell we do chemo for a lot less benefit than that! Also if they are give information on this site, it puts the risks into perspective, recurrance, mets, and new cancers have a person behind the statistic with valuable hindsight for guidance. Infact I'll gone one further, I think it's malpractice to give TNBC's uninformed lumpectomies because this study does exist. When you think about all the studies we gals have read, this takes a pretty good sampling and explains why are stats suck compared to the other bc''s.
Many women who've had lumpectomies go on to have mastectomies, and when it is done in that order, reconstruction can be a nightmare because of the radiation, women who are node negative can completely avoid radiation. Radiation can be extemely disabling and make recovery way tougher, if you don't need it, the double mastectomy is so much easier on the body and get you out from under the beast in 3 to 5 years. Reconstruction these days can yield some pretty good results, I went from a "36 D long" to some pretty choice mounds! But hell I'd of stayed flat chested if it meant I could be done with TNBC in 3 to 5 years.
Doing the double doesnt't do much for mets, BUT it significantly reduces recurrance to like 3% along with new bc. You're mostly out from under TNBC with a mast once you get past your 3 to 5 year NED. Everyone else is still at risk for recurrance and new cancer. They are finding these 2nd new cancers can be quite challenging because they don't catch them in time. This type of BC can become a nightmare you can't wake up from. It doesn't have to be that way.
Someone please argue with me!
argue: to present reasons for or against.
It's a good thing!
Ronda Edited by Ronda - Nov 10 2008 at 10:15am |
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Lauriejn
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Joined: Oct 18 2008 Location: United States Status: Offline Points: 178 |
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Posted: Nov 06 2008 at 7:07am |
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Interesting topic. I found my surgeon to be right on board w/Mastecomy vs. lump. He said to me, "It is ultimately up to you however I recommend a mastecomy due to the aggresive nature of the TN cancer diagnosis especially w/the knowledge that we have confirmed lymph involvement" "I want you to have the BRCA tests done and if positive, I'll have you come back to have the other mastectomy and oop" "Lets get what we can out of you now and see where we need to go from there" So, with the above coming from a doctor- you betcha I made the decision I did.
Laurie
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Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes Bone Mets dx Dec 2008-Stage 4 Albany, NY BRCA neg |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 06 2008 at 7:32am |
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Ok, there you go.
If we all had Laurie's surgeon we would be right on track. Sadly we don't.
He was on top of current studies and info and advised Laurie at the time she needed this valuable advice. By the time you get to the Onc you've probably already had your surgery unless you are doing neo-adjuvant chemotherapy.
As an added plus her surgeon also explained to her about BRCA counseling and test. That is fabulous, that is where it starts. So surgeons need to know what they are seeing when they read a path report and understand that if it is TN then that is different. lets look at some different options and make a decision.
I have never been told by my surgeon nor my Onc I was TN. I've noticed there are others in this forum that experienced the same thing.
I was post menopausal when first diagnosed at 56 and didn't get my brca 1 results until diagnosed again last year at the age of 61.
I have noticed we have quite a handful of women here over 50 with TN. I understand it is more frequent in younger women but find it interesting that we have the ones that we do so it isn't all just young women.
The average age for a woman to get breast cancer is around 55 to 58 yrs of age. I understand TN tends to strike the younger women of course.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Lauriejn
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Joined: Oct 18 2008 Location: United States Status: Offline Points: 178 |
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Posted: Nov 06 2008 at 8:54am |
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Pam- I forgot to mention the surgeon is fairly new- in practice since 2005 and does 1 - 3 fellowships per year specializing in breast treatments. The preverbial go to guy for answers...
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Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes Bone Mets dx Dec 2008-Stage 4 Albany, NY BRCA neg |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 06 2008 at 9:01am |
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Laurie I am so happy for you to have found this guy and soooo jealous!
Edited by trip2 - Nov 06 2008 at 4:12pm |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Darla
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Joined: Jul 24 2007 Location: United States Status: Offline Points: 162 |
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Posted: Nov 06 2008 at 9:14am |
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I haven't read all the posts I just wanted to ask that in researching constructing polls etc that you don't forget about us BRCA limbo girls. I don't know what percentage we are but I know of at least one other woman on this site who got the "mutation of unknown significance" result which is neither positive nor negative and sucks in terms of making decisions.
Thanks Darla |
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